“Autism is a Spectrum” Doesn’t Mean What You Think

Picture of a person's eye close up with a rainbow going over it in a diagonal line. The iris of the eye blends into the color of the rainbow overlaying it.

“My son is on the severe end of the autism spectrum.”

“We’re all a little autistic– it’s a spectrum.”

“I’m not autistic but I’m definitely ‘on the spectrum.'”

If only people knew what a spectrum is… because they are talking about autism all wrong.

Let’s use the visible spectrum as an example.

The spectrum of light. From left to right: Violet from 380 to 450 nanometer wavelength, blue from 450 to 495 nanometer wavelength, green from 495 to 570 nanometers, yellow from 570 to 590 nanometers, orange from 590 to 620 nanometers, and red from 620 to 750 nanometer wavelength of light.

As you can see, the various parts of the spectrum are noticeably different from each other. Blue looks very different from red, but they are both on the visible light spectrum.

Red is not “more blue” than blue is. Red is not “more spectrum” than blue is.

When people discuss colours, they don’t talk about how “far along” the spectrum a colour is. They don’t say “my walls are on the high end of the spectrum” or “I look best in colours that are on the low end of the spectrum.”

But when people talk about autism they talk as if it were a gradient, not a spectrum at all.

People think you can be “a little autistic” or “extremely autistic,” the way a paint colour could be a little red or extremely red.

A line going from white to slightly more red to bright red. On the left near the white/pink it says
How people think the spectrum looks

In fact, one of the distinguishing features of autism is what the DSM-V calls an “uneven profile of abilities.” There’s a reason people like to say that “if you have met one person with autism, you’ve met one person with autism.” Every autistic person presents slightly differently.

That’s because autism isn’t one condition. It is a collection of related neurological conditions that are so intertwined and so impossible to pick apart that professionals have stopped trying.

The autism spectrum looks more like this:

Pragmatic language, social awareness, monotropic Mindset, information processing, sensory processing, repetitive behaviors, neuromotor differences.

All autistic people are affected in one way or another in most or all of these boxes – a rainbow of traits.

If you only check one or two boxes, then they don’t call it autism– they call it something else.

For example, if you ONLY struggle with communication, then they call that social communication disorder.

If you ONLY have problems with body movement/control then that is called dyspraxia or developmental coordination disorder.

If you ONLY have sensory processing issues then that is sensory processing disorder.

But if you have all of the above and more, they call it autism.

You can see how ridiculous it seems, therefore, when someone says “we’re all a little autistic” because they also hate fluorescent lights or because they also feel awkward in social situations. That’s like saying that you are dressed “a little rainbowy” when you are only wearing red.

Having sensory processing issues doesn’t make you “a little autistic.” It makes you someone with sensory processing problems. Autistic people will understand your struggles and welcome you as a fellow neurodivergent cousin, but that’s it.

But in order for a person to be considered autistic, they must have difficulty in multiple categories spanning the spectrum. Diagnosis depends on evidence that you do span the spectrum in observable ways.

Some commonalities are less obvious and are not required for diagnosis but are almost universally-reported by autistic people.

Each autistic person is affected strongly enough in one or more categories for it to be disabling in some way. But each person’s dominant colour palette may look different.

Here are some examples of how autism could manifest in three different people.

Person One

Person Two

Person Three

As you can see, all three of these hypothetical autistics show classic signs of autism, and yet they all seem very different from one another.

Which one is the “most” autistic?

Person One would probably be described as “aspie” or “high-functioning,” even though their monotropic mindset might cause executive function problems and make it hard to live and work independently.

Person Two is the type of person who is often described as “severely autistic” since they cannot speak and do not appear to understand what goes on around them. However, people like Carly Fleischmann and Ido Kedar have taught us that in fact they are very socially aware and understand pragmatic speech quite well.

Carly’s interview style in her Youtube show Speechless, for example, is extremely witty and flirtatious in a way that many an “aspie” would be unable to imitate.

If the only thing stopping this person from being witty, social, and vivacious is a motor-control problem, then are they truly “more” autistic than Person One?

Person Three might be able to be independent in adulthood if given the stimulation and accommodations they require in order to feel comfortable and be able to learn. But they might be held back through childhood as parents and teachers try to force them to sit still and be quiet and learn in conventional ways, which might result in increasingly worse episodes of self-harm.

All three of these people are disabled in some way.

People who can speak aloud and have reasonable control over their motor processing are often called “high-functioning,” and yet these autistics often struggle with employment, relationships, and executive function.

My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile.

“That means I am less functional than 99% of people. Does that seem mild to you?” I asked her.

But, you see, I can speak, and I can look people in the eyes, so they see my autism as “mild.” My autism affects those around me mildly but my autism does affect me severely.

There is no question that those who suffer from severe neuromotor difficulties are extremely disabled, and I am not in any way comparing myself to them.

In fact, I am specifically asking people to stop comparing me to them. It does them a disservice to assume that they have what I have, only worse.

It is this assumption that dehumanizes people like Ido Kedar and Carly Fleischmann. It is this assumption that leads to them and many like them being treated as unthinking, unfeeling, and unhearing. It is this assumption that drives them to beat their heads against the wall in frustration.

If they have what I have, but worse, then they must be so very autistic that they can’t function at all. They must have worse interpersonal skills, worse information processing, worse social awareness.

But that isn’t true at all.

Not only was my mind fully present and understanding everything, but I read fluently. I thought of retorts, jokes and comments all day long in my head. Only no one else knew.

So, I was talked to like a toddler, not given a real education, and kept bored and sad.

-Ido Kedar, Vista del Mar Autism Conference

Don’t do it.

Don’t assume that an autistic person is so very autistic that they can’t even hear or understand you. Don’t assume that they cannot read just because they cannot use the toilet. Don’t assume that I am not disabled just because I can look you in the eyes and chat with you about the weather.

We have uneven skill sets.

Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am her opposite. I have great insight into people, think in words, can’t speak to save my life, and need 1:1 help.

-Ido Kedar, “Spectrum or Different?” May 2016

-Ido Kedar, “Spectrum or Different?” May 2016

Ido Kedar does not have a more severe version of Temple Grandin’s autism or my own. His skill set is totally different.

My neuromotor difficulties are limited to burning myself while cooking dinner, or stumbling and falling on a walk. Ido Kedar’s neuromotor difficulties, on the other hand, mean that his body often walks itself right out of the room without his permission.

Yet Ido Kedar could probably blow my pragmatic language skills out of the water.

Does that mean we have nothing in common?

No, based on what he has written, I can see that we actually have many things in common.

As autistic people, we both know how it feels to lose oneself in a good stim, how it feels to forget to look at someone’s eyes, and how it feels to need prompting to start a task. We both struggle with anxiety and wonder how it feels to be the kind of person who moves through life effortlessly.

We both span the spectrum in one way or another.

But beyond those things, our situations are different and our needs are different.

What people like Ido Kedar need is an occupational therapist and maybe physiotherapist to help them get control of their body movements. They need someone to help them develop skill with a letter board and an iPad so they can finally express their thoughts and feelings.

Instead, they are often infantilized, institutionalized, or spend years being forced to work on their ABC’s when they would love to get their hands on a science textbook.

I, on the other hand, have always been recognized as being intelligent. Instead, I struggle to have my difficulties be recognized. What I need is someone to support me– to cook, to clean, to organize– to help me recover when tasks have gotten larger and more complicated than I can process.  Ido Kedar longs for independence while I long for someone to depend on.

The system fails both of us, but in very different ways.

So please stop assuming that one kind of autism is “more autistic” than other kinds of autism.

Red isn’t “more spectrum” than green or blue. Apples aren’t “more fruit” than oranges. That’s not how it works.

The visibility of an autism trait doesn’t necessarily predict what that person can and cannot do or what supports they need most.

I shouldn’t be processing human speech, according to some. I shouldn’t be writing my thoughts. I shouldn’t even have thoughts. Well, I say, go listen to Beethoven’s Ninth Symphony and imagine writing it deaf and try to be a little humble about the brain’s unknown capacities.

Ido Kedar – March 2019, http://www.idoinautismland.com

Don’t assume that a non-speaking autistic who doesn’t react to your presence in the room is unaware of the conversation.

Don’t assume that someone is not really autistic just because they make eye contact with you and can chat about the weather.

Don’t assume that a fluently-talkative autistic person is capable of processing what you have just said to them.

Don’t assume anything about an autistic person.

For seventy years (at least), people have been making assumptions about autistic people based on outward behaviour.  Even the diagnostic criteria for autism is based on what is easily observable by an onlooker. They think that the stranger we act, the “more autistic” we are.

We are asking you to stop.

Ask us what we can and cannot do.

Even if it doesn’t look as though we can understand.

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229 Responses

    1. Thank you for breaking down the spectrum and presenting the 3 different examples. I actually have a much better understanding now.

  1. Thank you thank you thank you for this. Saving it to use as a resource with my colleagues (I’m a school-based SLP) and for myself. It elucidates a lot of the confusion I’ve experienced about my autistic students and their highly variable language skills.

  2. I am a mum to an autie. This has given me so much more insight. Thank you.

    1. How? It took SIX YEARS for me to get my son’s diagnosis, even when he was so obviously in need of 1:1 assistance that the school wanted to put him in a special-education class, where he would be the only verbal child. I attended that class and saw that they were all being treated like infants, in spite of what I observed to be brilliant comprehension in some. My son could draw an exploded diagram of all the organs of the body when he was 4, but he was now supposed to finger-paint in school, because they couldn’t justify getting him a teacher’s aide without a diagnosis. I beg your pardon, but I think every parent of a diagnosed child would disagree with your statement.

        1. The person was disagreeing with the comment a few above theirs that suggested autism was being over-diagnosed when in reality it’s often a struggle to get diagnosed, especially for women, older people, and those who aren’t stereotypically “autistic” or who are mistakenly labelled as “mild” or “high functioning.

    2. It’s not getting over diagnosed, its getting recognised. Theres people out there that are still undiagnosed, as there is more awareness & acceptance, people are starting to unmask a little bit and asking questions.

      1. I think you’ve misunderstood the article. It’s not over diagnosed. Diagnosis is not something that’s just chucked at people, in fact it’s often a battle and long process you have to fight for

        1. I totally agree that it is not over diagnosed. However, many doctors and psychiatrists tried to diagnose my brother as autistic, which he was not. Had they succeeded, the course of his life would be completely different, for the worse. He was still completely nonverbal at age 4, a classic sign of autism, and he had superb visual skills, while his verbal skills were completely nonexistent, another sign of autism. However, he exhibited no other signs of it. Our mom had to go to over 5 different doctors before she would finally find one who would listen to her. It turned out that he had auditory processing issues, and while the doctor couldn’t prove it, she said that something was wrong with the part of his brain in which you learn your first language, and instead had to learn English as a second language, which naturally took much longer. Now, my brother is completely verbal, and people are honestly surprised when they hear he used to have developmental delays. Again, his case was extremely rare, and autism is generally not overdiagnosed.

    3. That is highly unlikely. Not being diagnosed is one of the most significant problems.

  3. This is by far the best explaination of “The Spectrum” I have read.. thankyou for putting into words what I have been trying to tell people about in regards to my son for the last year.
    It is people like you that will make people aware just how much difference there is to neuro-diversity… I dont see it as Autism being ocer diagnosed, I see it as a greater awareness of just how much spanse there is to thr spectrum and that the people who do not fit the Autism mold are finally being recognised and seen as neuro-diverse as they deserve to receive the help they need just as much as anyone.

  4. my son is on the spectrum, as aspie. It’s really difficult for people to truly understand what that means. Actually difficult for us to understand too at times. I found this article so helpful and really insightful. Thank you

  5. My son was very obviously person number one. He was smart, gentle and kind. He was preparing to do the trial HSC exam last year when he instead ended his own life. He did not have a proper diagnoses but I know without a doubt he was “ASPIE” and it terrified him. I am a broken mother. He had just turned 18.

    1. That is tragic, and far too common a story for autistics, one of the reasons this blog exists: to fight for real understanding and acceptance. May you find peace.

    2. Ok Donna, how sad, I feel for you, my son is aspie he has troubles too, I find there is no support at all, I struggle to understand Harry as well due to lack of knowledge x

    3. I am so sorry. No words are even close to adequate. I can tell how much you cared about your son and still do. I am so sorry that he felt a need to do this anyway. 🙁

    4. Donna. I can relate to so being “terrified”, to being “broken”, indeed all you say about your son and yourself. I was born in 1949, so way before autistic and autism were brought into the public domain. What we now call the autistic or ASD was rather seen as “infantile Schizophrenia” As that was the only frame of reference on offer to me, I just presumed I was schizophrenic, and that was terrifying. Being smart, gentle and kind describes a good human being; one I’m sure you keep alive in your heart. Take care of you.

  6. Thank-you for this clear article, my amazing son is going through diagnosis now and your clear discriptions really helps me appreciate the dimentlsions to his personal spiky profile.

  7. Thank you. One of my daughter’s first diagnoses was ASD… and we were *constantly* getting people going “but she’s so *social* and *outgoing*… and now that they know that her particular set of symptoms is caused by a specific genetic mutation, and she has a genetic diagnosis, we have people going “So it wasn’t really autism?” That’s… not how that works. She still has all the same challenges and strengths- when they didn’t know what caused them, it was “autism”, now it has a different name. Sort of how “Rett Syndrome” was a DMS “Pervasive Developmental Disorder” diagnosis until they discovered the underlying genetics, now it’s a medical diagnosis.

  8. So what does it mean when a psychiatrist says my son has autistic traits but isn’t strong enough to be diagnosed.

    1. It means the Psychiatrist doesn’t think his traits cause him enough problems to be worth the diagnosis proces and costs. If you can see that your son is struggling but the psychiatrist can’t then they’re probably not the person you need.

    2. It means you need to find another psychologist and get a second opinion. You cant have traits and not be autistic. You either aren’t or you are, theres no inbetween.
      That’s like saying your showing all the signs of pregnancy but theres no baby there so your a little bit pregnant.

  9. This is such a clear explination that it’s something I’ll be recomending to all my friends. As someone who’d usually be considered high functioning and sometimes has difficult feeling associated with people who more obvious or disabeling needs I’m glad I gave this a read as it help clairfy a lot of what I was feeling. Thanks for writing it.

  10. This is a great explanation. I’m seriously considering forwarding the link to my local adult autism service lead psychologist and my support worker, and everyone else!

  11. Thank you, that was a wonderfully written article and being a parent of an aspie this has even def helped me see it all more clearly.

  12. This is great, many thanks. I do notice, however, that on some “colors” the description is centered on difficulties, and on others there are difficulties as well as abilities above the norm. I find this unlikely. I would have expected all the “colors” to be sometimes more and sometimes less advanced than in the neurotypical. Is there data on this?

    1. It represents differences. For example, in many autistic people information processing can sometimes be ahead in some ways and behind in others compared to neurotypicals. A monotropic mindset can also be a benefit as many autistic people turn their interests into careers, but can come with side effects such as difficulty with time management or work life balance.

      The DSM actually addresses this:

      “Understanding the (often uneven) intellectual profile of a child or adult with autism spectrum disorder is necessary for interpreting diagnostic features. Separate estimates of verbal and nonverbal skill are necessary (e.g., using untimed nonverbal tests to assess potential strengths in individuals with limited language).

      ….Since receptive language may lag behind expressive language development in autism spectrum disorder, receptive and expressive language skills should be considered separately.

      …. Even those with average or high intelligence have an uneven profile of abilities. The gap between intellectual and adaptive functional skills is often large. Motor deficits are often present, including odd gait, clumsiness, and other abnormal motor signs (e.g., walking on tiptoes).”

      That uneven profile abilities means that we can be better than NTs at some things and worse at others. The spectrum represents those differences overall, and each category might have positives, negatives, or both.

      Thanks for your question – it was a great one!

      1. My son’s receptive language is higher than his expressive, both oral and written. He has always read with understanding much higher than age/grade level, but his ability to respond has always been a struggle.

  13. I love this article!! You are so right on so many levels~ THANK YOU!
    I have a 23 year old (as of yet undiagnosed) son who falls in the level 1 category. It’s been a nightmare trying to get help for him, especially now that he’s an adult with a college degree and currently in grad school. I try and count my blessings but I’m so worried about him ever being independent with a “real” job, friends, a social life, true happiness.
    My heart bleeds for Donna. Such a tragedy. So sorry.
    PS Anyone live in St Louis?

  14. This piece is excellent in its consideration of the metaphor of “spectrum”; be that spectrum as associated with the concept of ‘autism’, or (somewhat alternatively) with the concept of ‘autistic’.
    I understand why these two concepts are phrased in terms of difficulties in particular areas, but (as a person viewing and understanding myself in terms of the autistic) I get concerned about a modelling of our grouping in terms of negatives and deficits.
    People wisely say, “when you have met one autistic person, you have met one autistic person”; making it clear how fraught with limitations are all ‘generalisations’ about the autistic/autism. At a late stage of my life, and after some years working professionally in the educational area with young autistic adults, I now feel that we have to take this wariness of generalisations even further. By that I mean that we have to consider that theorising about autism and the autistic is really the preserve of individuals who see themselves in terms of these ways of being human; which means that one generalisation and theorising about what the autistic and autism are, is had from one autistic (or nominally not-autistic) person. Understanding of what the autistic and autism are, then emerging from the network of human beings who consider themselves autistic. So a rolliing understanding open to development and evolution and change.
    Consider a parallel. What is it to be Indian or Chinese. Once we would have consulted colonial masters (doctors and other disciplinary ‘experts’ with the autistic/autism). Then these nations became independent (autistic individuals getting affirming traction and agency within the collective) in the modern age. Now any understanding of these things would have to emerge from the complex social/societal process of these nations currently (the emerging global network of autistic activism). It isn’t going to be any different with those who are autistic; over the long-haul we are going to get the autistic and autism defined (some favouring emphasis of deficits, others favouring affirmation of autistic characteristics and qualities) diversely by those who consider themselves autistic, and that rolling defining is going to develop and evolve and change.
    Spectrum could then be applied in many useful ways. One I would choose would be in terms of the extent to which, and the ways by which, autistic individuals could counter and transcend the complex manner in which social/societal dynamics often work to obstruct, undermine, and misdirect autistic agency (with all that stems from that across a development trajectory).
    All that being said. I’m only able to express these thoughts by piggy-backing on the excellence of this piece on how the metaphor of ‘spectrum’ applies to the autistic and autism.
    Personally I find useful understanding stems from the idea and rhetoric that “we are all a bit autistic”. Proceeding so might mean laying aside the metaphor and concept of ‘spectrum’ all together. I favour this gambit to counter the medical approach to autism/autistic. Medicine always works to make any ‘diagnosis’ as specific and narrow as possible. Medicine also has dis-ease at the heart of its approach. So the autistic gets thereby cut out of the nexus of collective process, and really set aside as a disease. I instead favour a social approach, where identifying broad commonalities in the general population and the autistic is used to bring the autistic back into the collective process nexus; where I (for what are always going to be personal/biographical reasons) sense and judge it should be. Resourcing of the autistic that is not possible or considered across medical modelling of the autistic/autism, can then be had.

  15. Thank you for this brilliant post. After my son’s diagnosis (with what would have been called Aspergers but is now labelled ASD), I was referred for assessment. However, I wasn’t prepared for the open-ended nature of the initial interview, after which I was discharged without a clear diagnosis. I was told, though, by the clinician that ‘everyone is on the spectrum’. This just seemed so wrong to me at the time. Thank you for clarifying what you understand the spectrum to mean; I hadn’t thought of it in these terms before. (I currently self-dx as ‘probably autistic’ and this article does nothing to change that.)

    1. Anna. Stepping off from your self-defining as (‘probably’) autistic and the associated matter of not being readily offered a diagnosis as ‘on the spectrum’. I would want to, if involved with your son, reflect on any deep characteristics of person that you (as parent) might share with your son. If a characteristic had in common was implicated in your son receiving a diagnosis of ASD, I would want to know what it was in and about you that saw you not offered that same diagnosis. The thinking being that what saw you work through and not be so obstructed as to see that characteristic taken as an indicator of ASD, might hold clues and keys as to what might better resource your son to stronger agency.
      Why do you object to the idea that everyone is on the spectrum? In the school in which I worked it was a common presumption that pretty much everyone associated with the school was autistic in one way or another. A deeper presumption was that the more one strove to represent and advocate for the autistic young adults in the School’s charge, the ever deeper one was drawn into being personally autistic.
      For me the autistic begins wherever an individual is depending on sense and perception and cognition that a contextual collective is unable or unwilling to engage with (I think that many parents then encounter this when contextual authorities refuse to engage with them across their parental understanding of their ‘autistic’ child). The work of autistic activists and autistic advocates and autistic allies, is then to work to so change the contexual collective that it can progressively do better in engaging with the autistic (in all its diverse and changing forms).

      1. Because by saying “Everyone is a little bit autistic” it diminishes what it actually means to have that diagnosis. You wouldn’t say everyone is a little bit deaf just because not everyone can hear a particular high frequency but otherwise has normal hearing. You wouldn’t say everyone’s a little bit depressed just because they feel a bit blue once in a while. You can’t say everyone’s a little bit autistic because they aren’t and perpetuating that myth is dismissive of what it’s actually like to be autistic.

  16. I thought I understood my “aspie” daughter until I read this. Reading this was like a light bulb moment for me. Thank you so much! P.S. Can you fix the facebook share link so we can share it on Facebook? Thanks!

  17. Thank you for your article. I have a brother-in-law who seems to fit in the one category. He’s never been diagnosed, yet at 31 he lives at home with his parents but hasn’t been able to keep a job or Finish a semester of school. He acts and talks like there’s nothing wrong with him but I’m sure he recognizes that he’s different. At this point do you think it would be valuable to have him diagnosed and actually have him confront it, or would it be better to just keep going on the way he is? Your opinion would be most valued.

    1. Unfortunately I don’t know your brother well enough. Those of us who were diagnosed late found it incredibly affirming. But many people get defensive when you suggest it to them.

    2. @Martha – do not underestimate the ability of people to self-deceive, especially if they lack the understanding of what is “different” about them from neurotypical people. A friend of mine who has an autistic wife and two autistic children has denied his own autism for nearly forty years despite quite profound struggles with almost every area of his life and the fact that these same difficulties that he had/has are now being mirrored in his children. He accepts that they’re autistic, he accepts that he has some of these issues but he STILL denies he’s autistic and says “it’s because of something else” – and if you ask him to take a self-assessment he will score “neurotypically” because he has no concept of how non-typical his behaviours and thought processes are.

  18. That you were able to put this into words is amazing. I hope so many people will read it and open their minds. Thank you. You have done a great service for all of us on the spectrum by writing this.I admire you and am ever so grateful.

  19. This was great to read. It really helped me to understand a few things about myself and my child. I can visualize how we fit on the spectrum now. Its great to be able to share this.

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